There is way more to me than just a life with Cystic Fibrosis, but its a huge part of my life, it affects everything i can do! Somedays i hate CF others i just get on with it! This is my life, my story, the way i deal with CF and the way it affects me! So read with an open mind, don't judge me or feel sorry for me! i'm stronger than you think and i'll keep fighting till the very end!!

Wednesday, 26 October 2011

Frustrated........

Well i'm still in hospital, been a frustrating few days!!

Last Tuesday my lung function after a week on Ceft and Col and 5 days resting in here with lots of physio and my lung function was up to 36 from 27!!! So after this good start i really hoped to reach my target lung function of 40%!! Last Tue my consultant saw me and put my steroids up to 30mg and increased my transamic acid and we discussed dNase, which i've not had since i was a kid, but my sputum was really thick! I was on fluids till thursday which helped loads, i'm not the best person at drinking lots of water, so my lungs are prob quite dehydrated.

Friday was Nat's funeral, which i must say was a lovely send of for a beautiful girl who deserved so much more from life, she had a baby pink coffin, which was so perfect for her, but it broke my heart to see! Her songs were;

Madonna: Like a Prayer,
James Blunt: Beautiful,
Claire Maguire: Save the last Dance for You and
Belinda Carlisle: Heaven is a Place on Earth

Four songs that every time they come on radio i'm going to blart at! Nat's mum Wendy told me she loved Like a prayer and heaven is a place on earth and used to sing them karaoke, even on her holiday in Tenerife she sang them, just 7 weeks before she passed! I'd never heard the Claire Maguire Song but now i have it on my laptop i've listened to a few times, not cried yet!! So that's good!! I've cried a few other times though! I sobbed all way through funeral, was so sad, words can't describe what it's actually like as a CF to go to a funeral of a friend who you know a few weeks ago was just bobbling along as normal, yeah not the best of health, but then one infection and their life is gone! To me i can't describe how much that scares me and scares me for my other friends around me! We all just have to continue to fight each day!!

So whilst i've been in here i've started an exciting project!! I'm designing a calendar to sell for my CF Campaign!! Apparently according to my TV guru Mathew Wright the other morning on the Wright Stuff "Meerkats" are taking over the world!! Well my mum and dad are both well into photography, have amazing cameras and had recently been to a local zoological park and taken lots of photos of Meerkats!! So my idea sprung into action and now i'm sat designing it here in hospital!! I'm doing this for the CF Unit @ UHNS campaign so i'm including photos of all the CF's that this will be helping and on the back page i'm including a memory of page of people who have lost their fight, who used to come our hospital!! I'm so excited about it!! So watch this space!! I'll be uploading photos of my calendar and details of how you can buy one!! Hope you like Meerkats!!! :) xxx

Back to my health, over the weekend my chest started to get really tight, this at first didn't alarm me as after a week and half colomycin IV i have a tendancy for my chest to get bit tight!! Saturday it was just tight but when i had my afternoon physio i had pain in my airways when i coughed!! That night i kept waking up with an uncomfortable pain and by sunday morning i work and my airways felt like they were inflammed!! So I asked for a doctor come see me and they stopped my Colomycin and put me on Ipratropium nebs which i had asked for earlier in the week with my consultant but he said that we'll just see how i go over the next few days! He says that alot, which is why i get so frustrated with him, he rarely makes changes straight away when you come stay in hospital!

So Monday my airways were feeling bit better, but had really bad chest pain on my right side, so he wrote me up for some different painkillers, but seemed to think that me staying on one IV just the ceft would be fine until Friday. He wanted me back on fluids to help with my chest been tight because i had had two physio's and not been able to shift any crap off me chest, and said that if i went 24 hours without any streaks of blood in my sputum then he was happy for me to try dNase on Tuesday.

It's now Tues and I did my lung function this morning, 34%, wasn't very impressed, but i kind of expected a drop with my chest been tight, least hopefully now he would realise i needed more than just the one IV. I also had my dNase trial, my physio thought from my lung function results that they wouldn't allow me to have it again, but Dr Lim has said it's ok! There was a drop in my FVC by 20%, quite a lot to be honest, but he happy for me to continue because with how thick my sputum is he thinks i really need to give it ago. He also listened now about the IV and I'm on Meropenim with Ceft for another week, but hopefully home on friday and then can have a few more days of IV's whilst i get used to normal life again! Plus i have a Halloween party to go to!! I have paid alot of money for me outfit! But it's well cool!! :)

Didn't go home tonight, it's been a tiring and frustrating day, still on me fluids too! I just hope this extra week helps, my chest is less tight today! I hope the dNase helps too, it didn't when I was younger but I my lungs have changed so much over the last few years that I'm hoping it helps!

So fingers crossed for a better for few days, cuz right now i'm wondering why i came in here, i've rested, had physio twice a day with percussion, cleared loads of crap, not gone to work and had all my meds and still i'm going round in the same circles as i have been going in whilst i've been having all the IV's at home!! Least now they can see it I guess with there own eyes! Although I feel like I have to prove everything to them!

It's not easy been in hospital as all CF's know, i'm in here with the two people who I see as been like a brother and sister, Aaron and Emma! x They keep me saine to be honest! The three of us went to Nat's funeral all together with my Steph, they were my rocks that day and they my rocks at the moment whilst i'm in here! I'm so ready to go home now, so friday better role on fast, i'm missing Steve and cuddles with my puppy!